Designing for Teens and Adults with Autism: Busting Myths and Taking Down Barriers

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1 Designing for Teens and Adults with Autism: Busting Myths and Taking Down Barriers Cheryl A. Cohen, MS UXDC Conference April 15, 2017

2 Quick Bits about Me Director of Online and Community Programs at the Interactive Autism Kennedy Krieger Institute Healthcare and technical communicator, UXer, IA, and autism researcher

3 Disability is a conflict between someone s functional capability and the world we have constructed. In this social view of disability, it is the product that creates the barrier, not the person Ability + Barrier = Disability *Horton & Quesenbery, 2013, p. 3

4 Eliminate the barriers and you have ability Franklin D. Roosevelt Four Freedoms Park on Roosevelt Island, NY

5 Task Write down one thing that you as a person involved in technology design might do to make a product more accessible to people with autism? Why do you think that will help?

6 Main Themes

7 Autism Elevator Speech Autism Spectrum Disorder (ASD) is a condition that affects the brain, behavior, understanding, and perception.

8 Autism Elevator Speech Autism Spectrum Disorder (ASD) is a condition that affects the brain, behavior, understanding, and perception.

5:1* It s three-dimensional spectrum Non-verbal to verbal 44%

9 Autism Elevator Speech Lifelong Prevalence is 1 in 68* (1.1 million children in US) Males to females - 4.5:1* It s three-dimensional spectrum Non-verbal to verbal 44% have average or above average intellectual ability* *CDC, 2016 Images courtesy CDC, 2016.

Autism Elevator Speech Core characteristics include* Deficits in social communication and social interaction Restricted, repetitive patterns of

10 Autism Elevator Speech Core characteristics include* Deficits in social communication and social interaction Restricted, repetitive patterns of behavior, interests, activities Sensory over- or under- reactivity Impairments in fine and gross motor skills, gait, and postural control common *DSM-5,

11 The nitty gritty Deficits with social communication and social interaction affect: interacting with others understanding nonverbal cues and communicating nonverbally creating, sustaining, and interpreting relationships 11

12 Language differences Knowledge of words is often fine (80%), but social aspects may be difficult, including: How words are put together Initiating or taking turns in conversations, knowing when to stop talking, or asking for help Understanding the subtle, contextual meaning of words (jokes, word play, idiom, metaphors, or insinuations) Pitch, volume, or rate of speech may not be typical in individuals with ASD. May not understand these aspects of speech in others. Prefer non-speech sounds over speech sounds Difficulties integrating visual speech cues with auditory speech cues 12

13 Think about how these language differences might affect how you: Design forms Use icons Write and structure content

Restricted, repetitive patterns of behavior, interests, activities Repetitive motor behaviors Odd use of objects including lining up and sorting objects Different speech patterns

14 Restricted, repetitive patterns of behavior, interests, activities Repetitive motor behaviors Odd use of objects including lining up and sorting objects Different speech patterns including repeating what others say (echolalia) Often people with ASD have strong reactions to any changes in routine small or large and develop their own inflexible routines. 14

15 Think about the consequences of errors and inconsistencies within interfaces and between interfaces

Visual Processing Abilities are uneven: deficits in verbal abilities; relative strengths in visual and spatial processing Often detail-focused.

16 Visual Processing Abilities are uneven: deficits in verbal abilities; relative strengths in visual and spatial processing Often detail-focused. For example, people with ASD tend to focus on facial features rather than the whole face, or the details of a scene rather than the whole. Difficulties in interpreting the larger meaning of an image or a scene. Individuals getting confused or distracted when a lot of information is provided. This trees rather than forest cognitive style, pertains to all of the senses 16

17 Visual Processing Some evidence that adults without intellectual disability, can comprehend the gestalt of a complex situation just as quickly if it doesn t involve social relations Problems in control of eye movement in some Problems in coordinating auditory and visual cues in some 17

18 Think about the images and videos that you use With visual design, simplify and unify

Auditory processing & sensitivity Approximately 65% sensitive to noise With background noise, have problems understanding speech Most likely part of the general sensory processing

19 Auditory processing & sensitivity Approximately 65% sensitive to noise With background noise, have problems understanding speech Most likely part of the general sensory processing profile in autism in which the filtering mechanisms work differently than in neurotypical population Photo credit: Processing/Auditory 19

20 Motor difficulties Fine and gross motor; gait and control of posture Translating intention into complex motor action Each component of a complex movement is treated separately rather than in a fluid, integrated movement Motor planning - may have difficulty using visual information cues to prime movements Easier time predicting and understanding machine motion vs. biological motion Effect the person s abilities to access educational and social resources 20

21 Frequently co-occurring conditions Anxiety Depression Bipolar Seizure disorder Suicidality Attention/focus Executive function/planning 21

22 Think about how you design interactions to minimize the amount of complex motor actions involved. Also, allow people plenty of time without time pressure.

23 Societal barriers People with autism are not fully included in society. Young adults and their parents reported*: In the first years out of high school, more than 1/3 rd in the US had no jobs and were not involved in higher education. Higher than rates for comparison disabilities. In college, highest STEM participation rates, but lowest college enrollment rates for comparison disabilities. ** Only 58% had paying jobs into their 20s. Most jobs were low wage or part time. Lower than rates for comparison disabilities. Vocational skills most important services needed *Roux, 2015 ** Wei, 2013

24 My research Little research has focused on how people with autism use technology in their day-to-day lives and whether that technology is accessible to them to meet their occupational, economic, entertainment, and information needs.* *Cohen, 2015

25 Objectives To identify the technology barriers by looking at: Which teens with autism were using the web and other technologies Whether they could use that technology successfully What was difficulties

26 Methods Anonymous online 80-question survey Administered to parents of children ages living in the US with and without autism Subjects were recruited: with the assistance of the Interactive Autism Network (IAN) Research Database and Community at the Kennedy Krieger Institute, Baltimore social media September October 2015 University of Baltimore IRB: Exempt

27 Participants Completed surveys = 347 Groups: Parents reporting on their teens with ASD 263 (76%) Parents reporting on their typicallydeveloping teens (TD) 84 (24%) Male-to-female gender ratios ASD (5.9:1) within expected range TD (1:1)

28 Analysis Analysis groups (n=347): ASD Average (129/37%) - Teens with ASD and parent-reported average or higher intellectual ability ASD Low (134/39%) - Teens with ASD and parent-reported below-average intellectual ability TD (84/24%) - Typically-developing teens with parent-reported average or higher intellectual ability No statistically significant differences between the groups in demographic characteristics (skewed toward higher SES) Statistical model used Logistic Regression controlling for age, gender, white (vs. non-white), Hispanic (vs. non-hispanic)

29 Does your teen use the internet or the web (go online)?

30 Which teens are going online? Almost all teens going online: TD 99% ASD Average 99% ASD Low 89% Why not? No ability (5) No interest (5) Only watches videos (2) Other (2)

31 Does your teen have problems with common web tasks?

32 Common web tasks: Filling in web forms Teens with ASD had significantly more difficulty filling in forms, with ASD Low group having the most difficulty. Filling in web forms ASD Low n = 117 ASD Average n = 127 TD n = 83 57% 20% 4%

33 Common web tasks: Finding information on a webpage Teens with ASD had significantly more difficulty finding information on a webpage, with ASD Low group having the most difficulty. Finding information on a webpage ASD Low n = 117 ASD Average n = 127 TD n = 83 42% 17% 6%

34 Common web tasks: Using search engines ASD Low group had significantly more difficulty using search engines. Using search engines ASD Low n = 117 ASD Average n = 127 TD n = 83 28% 10% 4%

35 Common web tasks: Switching between websites or webpages ASD Low group had significantly more difficulty. Switching between websites or webpages ASD Low n = 117 ASD Average n = 127 TD n = 83 15% 5% 1%

36 Which applications and programs is your child using and how difficult are they to use?

37 Office/Productivity Applications Teens were using a wide variety of applications, with ASD Low teens using fewer office/productivity applications and having more difficulty when using them than ASD Average and TD groups. Word processor use Had difficulty ASD Low ASD Average TD 59% 36% 82% 11% 79% 5% Spread sheet use Had difficulty 30% 82% 51% 23% 68% 7% Graphics, drawing, or video editing use Had difficulty 39% 45% 62% 14% 81% 5% Calendar/scheduling use Had difficulty 31% 54% 43% 22% 66% 7% Calculator on device use Had difficulty 62% 16% 78% 1% 95% 1%

38 Entertainment Applications The ASD Low teens were using entertainment applications less and having greater difficulty than the other groups. Video/movie use Had difficulty ASD Low ASD Average TD 75% 8% 82% 0% 95% 3% Games use Had difficulty 84% 6% 91% 0% 96% 0% Books/magazines/web on device use Had difficulty 55% 19% 88% 6% 88% 0% Camera on device use Had difficulty 74% 12% 81% 1% 98% 1%

39 Educational Applications There was no significant difference between the groups in the use or difficulty of educational applications, which tend to be tailored for different skill levels. ASD Low ASD Average TD Educational application use Had difficulty 83% 33% 77% 18% 83% 10%

40 Apps for Autism Apps with autism are being used mostly by the ASD Low teens. Despite the large amount of attention and development effort going into autism apps, only 29% of the teens, mostly those with ASD and below average intellectual ability, were using them. Most of the apps listed by parents were mainstream picturebased communication programs.

41 Advice from Parents to Us What advice do you have for people who design computers and other digital devices, computer applications, and web pages so that they could improve these technologies for your child? Six related high-level themes emerged. These themes are very much in line with the recommendations and guidelines for people with cognitive and physical disabilities.

42 Recommendations from parents with teens with autism Simple and predictable Error free Safe Multi-sensory Accommodate motor differences Respect your users These recommendations line up well with current accessibility standards and guidelines.

43 Simple and predictable Parents wanted: use of clear, simple, concrete language clean design predictable navigation clear instructions Stop making everything take a million unnecessary steps. Make them more intuitive and less symbolic in terms - be literal Make the apps easier to navigate for the lower functioning people. Some of the icons are confusing. There is sometimes too much stuff on the pages -- easily distracting to some people.

44 Error free Make them so nothing ever goes wrong and they always do what they are supposed to do! Ha ha ha...

45 Safe Parents wanted: Safe spaces for the teens to explore Better ways to monitor and control their teens activities The outside world to help foster a safe environment It would be fantastic if parental controls vis-à-vis time and content were more userfriendly.

46 Multi-sensory Parents wanted: Spaces that accommodate a variety of learning and perceptual differences More visual, language, and auditory Though there is a strong popular perception that people with autism are mostly visual thinkers, this may be an overgeneralization. Make symbols also come with a description. The "trash" can could say "delete things "- that is a concrete concept. My daughter is an auditory learner. If there would be an option for the instructions to be auditory as well as in print, that would be very helpful! make them more visual -require less reading

47 Respect Parents commented that: Despite cognitive differences, their teens appreciate games and information with sophisticated, age appropriate material. Be sure to design fun and interesting spaces for older people with lower cognitive abilities. They are not children. Make graphics age appropriate. A 13yo may read at a 7yo level but doesn't want to read about first graders.

48 Accommodate motor differences Fifty-nine percent of the teens with ASD in this study had fine motor difficulties and 41% had gross motor problems. Parents reported that: ASD teens are having more difficulty with device use, but using all devices Touch screen is the best. Mouse use is difficult, double clicking is difficult. Touch only, not dragging or swiping or anything more complex.

49 Summary The ASD teens in this study are devoted users of technology. For many, technology is a special talent and interest, a career goal, as well as a lifeline. Yet technology in its growing complexity poses many barriers to this population.

50 General accessibility standards and those specifically for cognitive differences are good for people with autism and are good for everybody. Make it easier for others and it will benefit autism

51 If you are doing user testing, don t forget to recruit users on the autism spectrum. If you are doing QA, don t forget to hire people on the autism spectrum.

52 A Web for Everyone, Horton and Quesenbery Letting Go of the Words, Janice (Ginny) Redish Books

53 For further reading Plain Language.gov (plainlanguage.gov/) Cognitive Accessibility User Research (w3.org/tr/coga-user-research/) Web Accessibility Initiative (w3.org/wai/intro/wcag)

54 Your elevator task! Write down one thing that you as a technology designer might do to make a product more accessible to people with autism? SHARE!

56 Additional questions about autism? IANCommunity.org

the Interactive Autism Network (IAN) Research Database at the Kennedy Krieger

57 Acknowledgements Individuals with autism and their parents and guardians for their generous contribution of time and effort Subjects were recruited with the assistance of the Interactive Autism Network (IAN) Research Database at the Kennedy Krieger Institute, Baltimore My thesis advisor, Kathryn Summers, PhD My stats mentor, Alison Marvin, PhD You!

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